Tovaxin and fatigue

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Re: Tovaxin and fatigue

Postby NHE » Sun Jul 15, 2007 4:49 pm

chrishasms wrote:When I first got diag'd I told a PT I was seeing I was going to start exercising because it would help me not become a cripple. She said. "unfortunately MS doesn't work that way." I didn't exercise for a year and got worse. I really wonder how I would be if I wouldn't have listened. Then I saw Tim's site and the part about the brain having great plasticity. It dawned on me she was wrong.

Hi Chris,
You may be interested in reading a couple of my prior posts on the topic of exercise and neuroprotection/regeneration.

http://www.thisisms.com/ftopicp-7811-.html#7811

http://www.thisisms.com/ftopicp-11281-.html#11281

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Postby Loobie » Mon Jul 16, 2007 4:39 am

Chris,

I've felt that way since I got my dx in '01 also. You can look up a thread I started about 3 months ago about exercise and relapses. I wanted some other opinions about whether exercising hard was actually damaging to us. I had been pushing my jogs to the point where I was stumbling and tripping and barely able to finish. I think I was going too far because I was hurting my joints and my feet (I'm paying for that nowwith a foot condition), but I always felt like endorphin release and the satisfaction you get from a workout are also keys besides the pure physical benefits of being in shape.

So I've changed and am, for now, "bowflex only" until my foot heals. My upper body can take much more "pushing" than my lower body, and I get my cardio by using it as a rowing machine for 15 minutes after an upper body workout. Everything works better when I exercise. The huge one is that my elimination systems work ssoooo much better. My bladder and my bowels more or less "lock up" when I'm not exercising and I dread the day that I can't work hard enough to get a good sweat going. The ones that are the most satisfying are the workouts I do when I really don't feel like it. After a hard day or whatever, I always find out once you get past the first couple of minutes, they are generally the best ones.

I am coming to the point where I may have to give up my jogging for good. It is becoming so hard to even get a mile in, and now that I have the foot injury, I may have to look at getting a stationary bike; I just don't feel like spending the money. It is also very satisfying mentally in that I always feel that if I can workout, I can handle going to Lowe's or something else that just wears me out and leaves me with the feeling of not even wanting to get in the car to go do it.
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Postby CureOrBust » Mon Jul 16, 2007 5:45 am

Loobie wrote:It is becoming so hard to even get a mile in, and now that I have the foot injury, I may have to look at getting a stationary bike; I just don't feel like spending the money.
I bought a second-hand elliptical magnetic cross trainer. Best thing ever since jogging is out for me. Allows different resistance, and going in reverse also. The cross-trainer gets you to do both upper body as well as legs.
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Postby Loobie » Mon Jul 16, 2007 9:18 am

Thanks Cure,

I am definitely going to look into that. My Mom has one from Nordictrack that I'm going to try. With the foot thing I have going on, this would really be appealling since your feet don't leave the "pedals"
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Postby chrishasms » Mon Jul 16, 2007 9:22 am

I can't even imagine walking a 100 yards with my clonus although the Walkaide is definitely getting my strength back.

I'm looking into getting Botox in my calf muscles to relieve this or to help it out. My fear is if I get Botox my muscle will atrophy. On the flip side, does my Quality of Life go up, and will I be able to exercise the other muscles better? Because of the clonus I cannot do many of the exercise I want to do, and the calves being so tight seems to affect the rest of the leg muscles.

No clonus no issues with exercising the legs though.

So now what? lol
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Postby Loobie » Mon Jul 16, 2007 9:44 am

I don't have the clonus that bad. I guess I have it somewhat because it's "on my chart", but I've never had it affect me. Correct me if I'm wrong, but is that where you have pressure put on your foot and it jerks up and down? That is a horrible description, but if I'm close I'm sure you'll know what I'm talking about. I'd never thought of that as being anything more than an indicator, but it sounds like it turns in to outright spasticity.

Do you have the leg extension attachment for your Bowflex? I bought mine when I was healthy with the intention of looking like the guy in the commercial 8O so I have all the attachments except the squat attachment. I always hated the hamstring exercise portion of that, but now that I'm not running, I'm doing it anyway to try and keep strength up. I don't know about you, but I've been very satisfied with that machine. I've had a few other "home gyms" over the years and they don't come close to the Bowflex. Keep it up Chris. It sounds like you are very commited to keeping your chin up as it pertains to PT. I got some neg. feedback from a few of the physicians on here about creating "mini-exacerbations" when I exercise hard. I decided to blow them off since I've never received anything but positive feedback from all of the people I deal with personally and I don't know what I'd do if I couldn't feel like I was "fighting it" the only way I personally can.
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Postby chrishasms » Mon Jul 16, 2007 11:42 am

http://www.chrishasms.com/photvid/videos091006.html

It's my clonus. Pain in the keester. Also, if I get to hot every symptom I get is 5 times worse. Either you suffer for a little while after exercise, or you suffer from actual disease progression. :P

We can't win lol !
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Postby robbie » Mon Jul 16, 2007 12:01 pm

Hi Chris good to see the videos , i didn't realize
the name (clonus) but i get it all the time. I won't let myself be a cripple either except i am. I would like to show vids of my spasms but it's kind of depressing so i don't want to be a downer. Anyway it's good to see actual people here it adds to the site.
Had ms for over 19 years now.
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Postby Loobie » Mon Jul 16, 2007 2:21 pm

Well I finally got a dx on my foot. It is called a neuroma. The second I told him that it felt like there was a rock under the ball of my foot up by my toes and that I was always taking my shoes off to adjust a bunched up sock that wasn't bunched up he said he knew what it was. I apparently got it from running and walking around on concrete all day at work. I got a nice Cortisone shot between my second and third toes (boy was that fun) and now that it has worn off it hurts like hell! I'm still going to Bowflex though. I have to stay off my foot as much as possible for a while and go back in three weeks. At least he didn't say "well it's tingling and hurting because of your MS", which is what I almost expected. But hey, not all things are MS related even though it feels that way sometimes! Keep your fingers crossed that it goes away because some of the spasticity in my hamstrings is subsiding and I would love to try a jog. Which in my adolescent, athletic psyche usually means I'll do it way ahead of schedule and hurt it again.
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Postby MaggieMae » Tue Jul 17, 2007 12:21 pm

"there was a rock under the ball of my foot up by my toes and that I was always taking my shoes off to adjust a bunched up sock that wasn't bunched up"

Don't know - but my husband complains of this all the time. He hates to wear socks because he said that it feels like his socks are bunched up and he finds it more difficult to walk. Think it could definately have somethings to do with the M.S.
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Postby Loobie » Tue Jul 17, 2007 12:30 pm

I get that bunched up sock feeling all the time due to MS also, but there is one big difference. There is nowhere near the kind of pain that I feel from this. It gets worse when I run or stand and subsides upon relaxing. When he was working on my foot and hit that inflamed nerve, I nearly went through the roof, that is what made me come to the conclusion that it was not MS related.
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Re: Tovaxin and fatigue

Postby JanethePain » Tue Jul 17, 2007 12:51 pm

chrishasms wrote:Ok so my issue with MS is fatigue. I slept today for 4 hours. I take a vitamin that helps with it but even with all the other limitations, I want the fatigue gone.

One thing I've got the impression of is MS fatigue is gone with Tovaxin. Does it eliminate fatigue? They even had an animation on their site saying that. How is everyone doing with the fatigue? Heck with doing somersaults. Is anyone else awake?


For me, the fatigue factor seems to a thing of the past. I hit the floor about 7:00 am and pretty much do the things I used to do (although a bit more slowly!!!) until 10:30 - 11:00 pm.

That said, though, I'm either having the worst flare of my life or some injury-related problems. I'll post this adventure on the correct thread, if I can find it!!!

Just doggoned frustrating, that's for sure!
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Postby IHaveMS-com » Thu Jul 26, 2007 6:23 pm

Hi Bob and Chris,

This is an answer to a question on the previous page.

I exercise to maintain and gain ability. I don't think you can rehab yourself back to an EDSS of zero, but you should be able to rehab several points. The most that I know of is a 4 point drop.

I get 2 months of PT every year to work on different things. Most of the rehab research material that I have studied is for stroke patients, but what applies to them applies to MS.

I think it is easier to rehab MS than a stroke. The main difference is that with a stroke, you have blown a major area of the brain and with MS, you have blown a lot of little areas.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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Postby Lyon » Thu Jul 26, 2007 7:04 pm

IHaveMS-com wrote:This is an answer to a question on the previous page.

I exercise to maintain and gain ability. I don't think you can rehab yourself back to an EDSS of zero, but you should be able to rehab several points. The most that I know of is a 4 point drop.

I get 2 months of PT every year to work on different things. Most of the rehab research material that I have studied is for stroke patients, but what applies to them applies to MS.

I think it is easier to rehab MS than a stroke. The main difference is that with a stroke, you have blown a major area of the brain and with MS, you have blown a lot of little areas.
Hi Tim,
I agree with what you said although I think:
with a stroke, you have blown a major area of the brain
might be more accurate as:
with a stroke it's possible to blow a major area of the brain
but the main point
I think it is easier to rehab MS than a stroke.
I think is right on the money.

Bob
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